The following blog post follows the events of a tragedy within our adrenal insufficient family.
For me personally it hits close to home as Katie is about the same age as my daughter. I see this photo and cry over the horrible circumstances facing this family. It is my nightmare being lived by another. The only edits made were to remove last names and specific locations. All the rest are words from Katie’s mother, who as she witnesses her daughter’s fight for life, is fighting her own battle with cancer.
Posts are the FB updates from Katie’s mother…used by permission
A lot of people have asked me to explain Addison’s Disease and how it could cause cardiac arrest. Here’s a brief explanation from one of Katie’s friends in an Addison’s facebook group. Addison’s means your adrenal glands have ceased to function. They no longer produce any cortisol therefore a synthetic replacement is needed (usually hydrocortisone) along with other hormones The cause is unknown — Cortisol is essential for life. The normal human body makes the appropriate amount of cortisol 24/7 and is changing constantly in response to what the body needs at any given point in time. Lifting your arm uses cortisol. Cortisol affects almost every major system in the body — heart rate, electrolyte balance, blood pressure, the circulatory system, the neurological system, etc. Because my body can’t make any, I have to maintain enough for a “normal” day but also constantly be adjusting things according to what my body is experiencing in order to keep from getting too low, which would cause an adrenal crisis and potentially cause me to have a heart attack, stroke, go into a coma or die. If I’m overly stressed, injured, sick, etc., etc., — anything that causes stress to the body — my body can use all of its supply very quickly and I can have a crisis. And that is what happened to Katie, a stomach virus during the night sent her into adrenal crisis before she could ask for help.
It is with a heavy heart that we must inform you of a current family tragedy. Please forgive us for not calling or reporting this news sooner but it was and still is imperative that we maintain focus on healing. Please, I beg you to respect our need for this time to adjust as we move through this hour to hour, day to day.
On Sunday Katie became just slightly nauseous, a possible stomach bug. She said she was managing, no vomiting yet. Sometime through the night she must have become very ill. With Addison’s Disease the electrolytes can plummet dangerously low very suddenly At 6:30am Dave and I heard a loud crash. She had collapsed in her bathroom. It took a minute, two? to get into her room as her door was locked. She was not breathing. Dave began CPR, EMT’s were summoned and arrived in 2 minutes. Thank God we live close to the station. Thank God we were home. She was rushed to the trauma unit, unresponsive, but stabilized medically. We were told she had suffered cardiac arrest and later informed of multiple strokes. She was moved to the critical care unit and placed on hypothermic cooling to save brain function. Monday, Tuesday and Wednesday she remained on full life support. She is fighting. Yesterday she responded to me warming her feet and nodded her head when I asked if she wanted a warmed blanket. She was on so many means of support that her room had to be specially cooled due to the heat of the machines.
I knew her feet were cold, she hates that. Later she grabbed my hand in thanks for the blanket. They are gradually removing some support. She is down to one BP presser from 5. Four machines from 12. She is however on dialysis. Katie has not been told she’s sustained a heart attack. I’m not sure what she hears, she’s intubated for breathing and isn’t able to respond yet. Yesterday she had a good day of opening her eyes, responding visually, she grabbed my hand. We know there is cerebellum damage but we remain hopeful.
This is not a sprint. It is a long, long walking marathon.
Again, we are in need of some time before we can answer calls. As you can imagine, we are devastated. I’ve only contacted her 3 friends she’s been closest with most recently. They have visited but any more would overwhelm her..and us.
We promise updates and more information when we are able. We just knew we couldn’t continue isolation here without informing our whereabouts.
We dearly appreciate the offers of support and prayers for Katie. Today was difficult as she seemed less responsive but she is now off all medications supporting her BP, kidney and other vitals. In other words, she’s holding her own. She is still intubated for breathing and feeding. She is not awake but clearly fighting the tube with her mouth movements. This is a sign of awareness. We remain hopeful.
Another hard day. No parent should have to have the discussions with Dr.’s that we had today. As we left things today; no change, no worse either. She’s holding her own with vital functions. She breathed on her own for 12 hours. She is still in a coma, barely responsive. Until she wakes she will remain intubated for safety. By Monday plans will be in place for a tracheotomy vent. Only time will tell what neurological function can return. I will say, she hears us and she responds to a head massage. A huge thank you to Tessa for the so very stylish and tasteful banner and another huge thanks to Jake for driving up from SC and playing his guitar for her. David you’re the king for driving in evening commute traffic. And thank you Global Genes Rare Disease network for the flowers. Same goes to Andi and Katie’s aunts and cousins, such beautiful flowers. She loves you all. In time there can be more visits. For now it’s best to not confuse her. Love you all so much for the messages of encouragement. I’m reading them to her as well as Dave who needs a lot of support right now too. And a big hug to Elaine for holding our hands today.
After just 2 days without needing full life support..Kaiser demanded Katie be transferred to their hospital last night. We fought hard to have her moved to Anahiem where my Dr’s and treatments are, where her GP is and where we have friends to stay with. There was no ICU bed available at Anaheim and they refused to give us another day at Hoag. So, it was a long night. It takes hours to prepare and transfer an ICU patient. We were on hold from 2:30 til 6:30 pm waiting for the word to go. We were hungry, angry and tired. Fortunately upon arrival Katie was given excellent care. Also, we were told her eyes were wide open and moving left to right in the ambulance. I guess the fresh air was stimulating. I thought it would be. I just wanted her moved in the day, sunshine, not darkness.
So the wonderful Secret Garden florist went to the hospital today with deliveries to learn she’d been moved. He made the drive outside his route to come to Kaiser. Kindness from a stranger, warmed our hearts. And so we’re here meeting new Dr’s and delving into new questions, new tests. For now she remains the same. We have a weeks long plan of waiting. Feel free to pop over for visits after tomorrow. She has to be cleared today of all infectious possibilities since she came from another hospital. Oh, but I won’t be there for two days because chemo is tomorrow. In Anaheim. Damnit.
Thank you so much for all the offers of support for yesterday’s chemo. It was the hardest thing I’ve ever done to leave Katie’s side but I knew, after all she’s gotten me through the last 3 rounds she’d be furious if I interrupted the schedule. Our dear friend and Maxx’s foster mom took me to chemo and brought all the goodies we needed for the day plus grocery shopped before taking me home. Thank you Teri Kuhn Gillespie you were perfect company.
Collin said yesterday that he was thankful I had good friends. I thought a minute and said, well that’s because I choose women who are good mothers and raise their families well teaching them compassion. These are my friends and they know how to care deeply and selflessly. And without their support right now I would have already died of a broken heart but their physical support as well as messages and prayer lift my strength each day.
I’ve been a bit more affected this round, I don’t think grief and chemo are a good combination.
Katie’s condition remains the same. Only brief moments of wakefulness. She seems to hear familiar stories and respond with her eyes, and she also moved her eyes and head left to right on command during her neurology testing. No limb movement. She is breathing on her own for 6 to 8 hours a day then they turn the respirator back on to assist her through the night so she can rest.
The throat tube is preventive to ever making facial or speech improvement so she is in surgery now for a tracheotomy vent. We have had many discussions as a family, oddly enough with Katie as recent as New Year’s day..she would never want to continue in a diminished state of living. Her Dr’s agree that we will continue assistance for weeks before facing those horrible decisions. We are heartbroken to the deepest imaginable place. For Katie we will remain strong and intact. She would do that for her loved ones too. We’re waiting for her to come out of surgery and will update as soon as we know it went well.
Update: Day 12
Last week, on Friday night my father had a stroke at his home in Va. I couldn’t even write about it because the hideous onslaught of tragedy seemed almost too much to bear let alone ask for prayers. It was the first time that I sank to the floor and screamed why us, make it stop. I’ve NEVER believed in that approach to solving family illness but it was a horrible low. And, 30 minutes later we were back in action. Drying our tears and moving into warrior mode. My dad fortunately is home already with only a little speech therapy needed.
Doctors can cause you to sink to your knees, they can also inspire you to have faith and patience. We have been through both. After several days of little response, no movement, Katie’s outlook was heartbreaking. Maybe she overheard a discussion when we weren’t in the room. (We don’t allow any medical discussion in front of her) Maybe she just needed more rest. But she has been busy showing eye opening, recognizing voice commands and the tiniest hint of attempted limb movement. She has shown significant signs of brain function. Today her new neurologist told us this is a months long plan, not weeks. She believes in her heart that Katie is trying and fighting. So do we.
So. Now we are learning “in bed” PT and OT to supplement her 3 times a day therapy. She is still in ICU but likely to be moved this wk end to DOU. She is breathing on her own all day with the respirator back on at night to allow more rest and recovery. Katie had some discomfort after tracheotomy surgery but seems very comfortable now. We can not thank you enough for all the prayers, support and stories of encouragement. Tela, yours today was God sent. Nancy, having her name placed in the Western (wailing) Wall in Jerusalem with prayers gives us peace. The Addison’s groups from Sweden, the U.K. and U.S. Sending gifts and wishes; bless you.
Holding on tight, fighting hard. One day at a time.
UPDATE DAY 15
I wish it didn’t hurt so badly to write, but it does.I’ve tried so many times but I just close the computer.
On Sunday afternoon Katie began showing signs of distress. By the evening she had a seizure as well as a respiratory clot removed. Her pain seems increased, she’s able to squeeze our hand or blink her eyes in response to simple questions, but she is clearly not comfortable. Monday and Tuesday were more stable and tomorrow she will be moved to a DOU room (Definitive Observation Unit). This is also sometimes referred to as a step up move from ICU. At this point she is lingering between full coma and a PVS (persistent vegetative state).
Today Dave and I had her best friend’s mother sit with her while we toured Sub Acute Care facilities. If she remains stable for the next 4 days then that is her next move. It was, to say the least not an easy day; not that any days have been. I wish we could see improvement but as yet she seems “stuck” in this place. We will give her every opportunity to improve while also insuring she has the best care and is not allowed to suffer any pain. At this point it looks as though we will transfer her to a solely sub acute care facility. I can’t even begin to tell you the horror of the first center we toured. Overcrowded, multiple needs low staff ratio etc.
The next was a clean, well staffed, reassuring, loving environment. So, tomorrow the big move out of ICU then onward out to fresh air later in the week. Still feeling your support, I read all your messages to Dave and we all thank you. Don’t stop, you’re our rocks.
*** I forgot to mention that I played our favorite mother/daughter out to lunch shopping song while she was on the EEG monitor. The crying line registered hugely. I know she heard it.
From Adrenal Insufficiency United:
We will continue to update Katie’s story here on our blog. If you would like to send words of encouragement we will gladly forward them to her family. Place Katie’s name in the subject line and send them to firstname.lastname@example.org We will ask Katie’s family if they would like to share their address for those who wish to send cards and will post it here if they wish.
Share this story and help spread the word that adrenal insufficiency is life threatening. Nausea, stomach bugs or otherwise “typical” illness in someone with adrenal insufficiency can be dangerous.
Updates Day 23
Katie’s condition has stabilized enough to warrant a transfer to the sub-acute facility. Yesterday we were told they would hold off til Friday, possibly Monday so I’d be recovered from yesterday’s Chemo to attend the transfer. Welp, Dave was just informed an hour ago it will take place today. Tessa , her friend has offered to meet Dave to help pack up her room and accompany them. Come hell or high water I will get in the car with my chemo pump a dangling and meet them in San Pedro. I want to see her face in the fresh air and light. She is still in a PVS stage, unable to communicate, smile or speak, no motor movement except her right hand. She is able to wrinkle her brow when upset, that is all. So to see a reaction to fresh air is my greatest wish. I have to be there. We will update you all with her address and visitation rules after she is settled.
***UPDATE HOSPITAL FAILED TO PUT THROUGH THE PROPER PAPERWORK AND SHE LOST HER BED SPACE AT SAN PEDRO..we are now fighting to appeal their plan to move her to a horrendous, filthy facility. Boxing gloves on..to be continued
Update Day 25
We fought and won the battle to not allow Katie to be transferred to the nursing facility. Our case manager and social workers all agreed we were justified. However their hands were tied as Hospital admin was pushing. We pushed harder. I was also advised that my presentation was so well stated that they would like me to file a formal complaint against the nursing home for having only one choice, a horrendous run down choice. It is simply not in compliance to the same level of care provided by their new, modern and well staffed hospitals.
O K, I promise, as soon as I’m through focusing all our energy on Katie’s care and my little inconvenience called cancer. I promise I will advocate for all families.
We were elated after 24 hours of a multitude of favors from friends and phone calls and SO much negotiating (even guaranteeing a huge sum of money) that we were finally confirmed a space at Providence Little Company of Mary in San Pedro. Just one problem. Now Katie is not ready. On Friday around 3 pm she began to vomit profusely. This continued into the night. It was the most difficult thing I as a parent have ever witnessed. With a trach vent and paralyzed you can only imagine the distress and chaos. Four nurses, respiratory, pulmonary Dr and the intensivist Dr all working to save her. At this point the cause is unknown. Her wbc is up, slight fever, possible start of a uti. We are waiting X-ray and culture results. With Addison’s any discomfort or pain presents with vomiting so it can even be an Addisonian crisis. For now she’s on a stress dose of iv hydrocortisone and antibiotic. Her last 6 hours have been stable. Dave spent the night but by 6 pm last night I was overwhelmed with chemo side effects. I left my car there and let Collin take me home. I’ve been in bed all day while Dave took a 1/2 day and our dear friend Andrea took over for us. She is not only like a second mom to Katie but highly intelligent and is an excellent mediator with medical staff. Thank you Andrea from the bottom of our hearts.
For now we hope Katie continues to improve and can be moved Monday.
It’s my greatest promise to her that she WILL feel sunshine and fresh air.
For those who’ve been following,
UPDATE DAY 31- Dose of reality
The hospital has done all they can do. Katie was cleared for a transfer to the subacute care yesterday. Again we were told no bed in San Pedro but there was one at sub par facility. NO. No Kaiser don’t even try going there again. Three hours later, more calls put in to “people” who represent us and suddenly there’s an available bed in San Pedro. Good try, but you’re dealing with the Berrys.
The transfer went smoothly. She was lightly sedated to calm her as her pain has been at chronic levels due to a new development of Hemisballismus. She did get to feel fresh air and daylight just before the sun went down. The crew from Liberty ambulance were kind enough to pause and let her absorb it. They also confirmed our disdain for the other facility in Orange telling us we made a good choice. I made it to San Pedro before the ambulance so I was there to greet her and it felt so good to kiss her face and smell fresh air on her skin.
Her room is near the entrance and a double room but for now it’s private, no roommate yet. The center is clean and calm and loving. BUT- the reality is, no full time nurse. 18 patients to each RN, 30 to each CNA. She is no longer on monitors. No respiratory monitor, no heart rate monitor nothing. If she fails, no one will know. Her vegetative state has prevented any treatment of her heart arrhythmia so that is a ticking time bomb. Today we will ask about hiring a private nurse. I’m not sure what the legal restrictions are but I suppose we could hire one and pretend she’s a family friend. We happen to know one.
I wish I could say something positive other than she can finally get fresh air. The truth is six Dr’s have confirmed the amount of brain damage and she’s been diagnosed as not able to recover.
Dave is hopeful more time will provide a miracle. I’m less able to watch her suffer. At some point her aching body will decide. I pray for her to feel no pain. It’s my duty and promise to her to make sure she isn’t suffering. It’s difficult enough to manage an Addison’s patient let alone one who’s in a PVS place of pain. So for now it’s pain management, physical therapy and loving visits. I’d still like you to clear a visit with me before arriving, but please feel free to be spontaneous if you’re in the area. And Jake bring that ukulele and guitar. I know she loves your music and you. Tessa thank you for helping us through the move and for rushing to Kaiser in time to give her a road trip hug💚🌻💚
Thank you all for your generous support and love during our time of grief.
Providence Little Company of Mary SubAcute Care
1322 W. 6th St
San Pedro, Ca. 90732
UPDATE 1 MONTH AND A DAY-
We have Katie settled into her new subacute care facility. It is a loving, kind and caring environment. She is receiving the best care, even more than we hoped for. However, Katie’s condition of rapid, uncontrollable arm movements have become painful causing cramping, bruising and distress. This has been managed with quiet, calming and soothing techniques but eventually she needed to be medicated. She also required a cast on her left arm to help quiet the movements as well as inflatable padding around her bed rails. This has changed her visitation rules. Any stimulus upsets her unless she’s been lightly sedated. Everything has changed from when she was in a coma requiring constant talking and hand holding to now in a PVS of distress, requiring no chatting, music or overstimulation. She silently cries every time she sees us. We’ve been taught by Nicole, her OT a technique to calm her, and last night I was relived to have it work before I left. I now refer to Nicole as the Katie Whisperer.
Until further notice we are only allowing her best friends Tessa and Jake to come for brief visits. Yesterday they had time with her and it was emotionally draining for them. But, they love Katie as we all do.
We hope you understand. However if you’re in the area feel free to call me, there is a lovely library and we welcome visits and hugs with the Berrys.
AIU has made the memes below please feel free to share!
UPDATE DAY 36-
When we moved from Yorba Linda to Huntington Beach 11 years ago the first neighbor’s we met were Tracy and her husband Louie. They were warm, funny and you know, just neighborly. So when 14 year old Katie joined her brand new high school surf team it was a bit scary, she didn’t know anyone let alone how to mount a surf rack to her beachcruiser. She was determined she was going to ride her bike to that 6am surf class at the pier every day. No car rides for her. Welp, the night before her first day we were having trouble with the assembly ( Dave was at work ) and so we went 3 houses down and ta dah, Louie to the rescue. He and Katie got her bike ready to roll for her first day of surf class, and it’s always been a good memory for her.
Yesterday I sat in their home and finally talked to them. I explained the entire tragedy. As the three of us cried, the thing that we all tried to come to terms with is that Katie didn’t ask for help sooner while vomiting. It’s so hard to reason given how much she’s been through with Addison’s, how much she should have known about the seriousness of this disease.
I was forced to really retrace our experiences with the multitude of endocrinologists she’s been through.
And the reality is, she was, from the very first Dr ridiculed, actually chastised for trying to inject her emergency solucortef during a crisis. the head of Endocrinology at the hospital actually said ” It’s not a big deal, you should just take your hydrocortisone and you should be fine, don’t be over dramatic with the injection you live near ER’s it’s not that necessary. He hadn’t even added the florinef in to her regiment yet. I remember standing there in shock, Katie and I both feeling bullied by this pompous, arrogant man who has no right to be a Dr. So much for taking a life threatening disease seriously. And so this continued from one Endo to the next. Not one ever treated this disease with the knowledge or respect or seriousness that it deserves. Katie was so under and over medicated that she was hospitalized more than 45 times the first 4 years after diagnosis.
For the past year she had it more under control without using an Endo, her GP was managing her better than anyone before.
So as I sat in our friend’s home yesterday, the three of us crying as Katie lies in a subacute care home, we wondered; would she be our beautiful vivacious Katie right now had she not been undereducated and intimidated by her Dr’s?
For now I will have to speak up for Katie and all of the Addison’s patients because she can’t speak and likely never will. Her time spent in a PVS condition has been painful, muscles contracting, infections, and unable to communicate or even swallow. We are in a cloudy state of day to day confusion with no real prediction of her future. We are for now, just day to day. Our talks with the chaplain have been our best means of support. That and all of you. Your support has truly helped us put our shoes on each day and carry on.
UPDATE- DAY 48,
When we were briefed by Katie’s Dr’s about what to expect in the transition from ICU to a Subacute Care facility, we thought we knew what was to come. We knew the risks of infections, skin issues, pulmonary and cardiac problems. We never knew so many would affect Katie in such a short time. For most of us we would whine like babies if we had even one on that list and she’s had a multitude of battles.
For the past 5 weeks we’ve never seen any expression except pain. She’s barely been able to sleep. She has excellent, attentive, loving care but her condition is complex. A new medication seems to be giving her some relief in the last 48 hours, allowing intermittent rest.
So, today as Collin and I drove to San Pedro with Duke, her buddy in tow, we discussed the likelihood of this visit not going well. Dave was already there and said she’d been uncomfortable all morning. “Oh well, we thought, what’ve we got to lose, let’s take him anyway.”
When we arrived- and by the way how cool is it that our dog is allowed to visit in her room?- I spread out a clean sheet and Collin lifted him onto her bed. He sniffed her hand, looked at us as if he was confused, she smells different he was saying, I’m sure he was confused. But her face lit up as we told her it was Duke, we placed her hand on his head- AND SHE SMILED. This continued for several minutes..then.. THE RESPIRATORY TECH KNOCKED ON HER DOOR AND WALKED IN. If you know Duke you know what happens when someone knocks on the door. Attack dog😳
Collin held him by the collar and we told the guy he’d better come back later if he values his life. So Collin made a funny joke saying hey Katie I think you’re gonna need a new respiratory tech, that guy’s probably never coming back. As we all laughed, SHE LAUGHED. Silent, no sound but her whole face laughed. So of course Collin kept it going and she laughed 3 more times. We were so happy and shocked, in disbelief to have witnessed a laugh! Then, just as a light bulb surprises you when it burns out, she too was done. She and Duke relaxed and she slept next to her ol pal.
It was a joyous, emotional morning for all of us.
We don’t know what Katie’s future holds. She is disabled in so many ways. She was in more pain later in the day and required more medication to sedate the spastic movements. Her battle to fight infections continues. One thing we do know, today we all, all four of us laughed- and it felt so damn good.
March 5, 2016 UPDATE- 2 months and a day, 61 days or 1,465 hours
January 4th, 6:39 am we heard Katie collapse from cardiac arrest due to complications of an Addisonian Crisis. It happened so fast. She was on the phone with a friend at 10:30 pm the night before. Something during the night went very wrong very quickly.
The following days have not moved so swiftly. We feel as though we are swimming through mud. Her phases of recovery have been lateral but changes all the same. She has required several rounds of experimenting with drugs to calm her onset of hemiballism. For 3 weeks her involuntary limb movements were so violent they prevented sleep. We feared she’d die from exhaustion or another Addison’s crisis. Her Dr is challenged by her multitude of illnesses. Her heart valve is not functioning properly, she has an arrhythmia that can’t be surgically repaired with an ICD because her condition is too unstable. She has developed a superbug that’s on a 3rd round of hopeful treatment. Her body rejects the GI feeding tube ingredients causing once a week vomiting, also causing weekly weight loss. And of course there are skin issues that must be constantly treated. Most drugs for treatment are legally blocked from usage as they are red flagged as fatal when entered into her medical file of interactions.
Yet, somehow we have begun to see some facial responses that show she is comprehending our words. She seems to try to move limbs in PT, it’s both encouraging and heartbreaking to watch. We requested an evaluation with a neurologist to reevaluate her degree of brain damage and discuss what the future may hold for her. We are very concerned with pain, infection and comfort. This is such a gray area we’ve been snowballed into. Kaiser agreed and next Wednesday she will be moved via ambulatory transport to LA for a day of evaluation. I’m not sure if we will leave with any helpful news but we have to continue to inquire.
Daily visits to a subacute facility are a shocking revelation of what happens to cardiac and stroke patients. I’ve met families with loved ones who’ve been there for 10 years or 10 months. Just warehoused on life support. I can’t imagine that for Katie. I hope we aren’t faced with that; for her sake, and everyone who loves her.
**also Kaiser has provided round the clock 24 hr aides to sit with her so we can rest. She has great nursing care but this provides greater safety and comfort to us knowing her erratic movements are continuously watched
UPDATE DAY 67-
Two weeks ago Katie’s condition had worsened. Her multitude of illnesses combined with brain damage and nutrition malabsorption was beginning to look fatal. We were on a path to just keep her as comfortable as possible with meds. 24 hour aides were brought in to watch over her.
As her mother I knew what impending decisions lay in my hands; I began making memorial arrangements. My emotions were and are all over the place, mostly trapped in a pounding, aching heart. I made the calls, readied a file and tucked it away. In the mean time we had requested an evaluation with a leading neurologist and it was finally approved for March 9th. This would hopefully confirm or give us, as a family some sense of direction.
Days later, before her appointment, even while struggling with declining weight and infections, Katie began to interact more. No voice, but with her eyes. I showed her a post card sent by her friend Catherine and I swear her eyes were tracking the writing, she was READING I know it. She cried, then laughed at the message. Appropriate response. She also began making hand gestures, fist pump, pinky swear etc. When Tessa and Jake visited she was very responsive. Tessa told her to kick JAKE and she did! Were these improvements? It certainly seemed so.
So, Wednesday she was taken by ambulatory transport to her Dr appointment, she loved the ride, the guys were young and played good music. She was smiling. Her appointment went well. She showed limb responses, command response to opening mouth sticking out tongue, raising arms etc, when the Dr said I think you’re ready to get out of that bed aren’t you? She grinned a mischievous grin, rolled her body and threw her legs over the side! 😳
His assessment was to get her moved, in 2 weeks to a more aggressive rehab facility which he will recommend. He said I do this all day and I’m prepared to tell families when it’s time to let go and she’s not there. I feel she will be walking in 6 weeks. Will she ever speak again? Maybe, but slowly. Will she be the same? Unknown. Will she be independent? Unknown. Will she finish college? Drive a car? Not likely.
As her mother who has watched her struggle with Addison’s Disease and push on, I know she’s strong. I know I should be elated with this news but I’m still heartbroken. I’m terrified for her future. Will she regain her intelligence or be childlike? Will she know right from wrong? Will she be safe? It is so painful to see your brilliant, industrious daughter have her future that she was working so hard to achieve- just snapped like a twig. Broken. But I will only allow but so much disappointment to linger. We have to cheer her on and hope, just hope. Yesterday while Dave and I were at my chemo infusion her caregiver sent a video of her in a wheel chair but pedaling a stationary therapy bike. And SHE was pedaling and she was fast!! From the best we can determine, Katie wants to keep moving, so we will move mountains and oceans with her.
UPDATE- Day 85, it’s a long one
As of the last post Katie was struggling to keep nutrition down and weight up. She’d lost 25 lbs and seemed unaware of her circumstances except for pain. She was showing slightly more response to commands but not fully. Her digestive issues were downright frightening.
Dave and I were questioning why we’d let things ever go this far. We knew it was not what Katie would ever want. Who would WANT to be dragged through a coma, PVS, massive infections, pain and weight loss to be left mentally and physically disabled? Who?
We called a meeting with staff. And man was it a meeting. Twelve of them, two of us, a big conference room full of experts. The format was, they each speak, around the table, then we could ask questions or make a statement. And so it went, the Dr, nurse, respiratory, 2 occupational therapists, 2, physical therapists, speech pathologist, chaplain, case manager, social worker and administrator. They each stated that while they couldn’t predict her final outcome she was, in their eyes making progress.
My turn. Progress? Progress in your eyes but in Katie’s? Is she going to jump in her lil Suburu and finish college? How will we manage if you can only go but so far in treatment then you leave her disabled? How will I live with myself knowing she never wanted that? What will her future be like? We’re not young. Do you not think that you should have told us 2 1/2 months ago that there is no documented case of meaningful recovery after no pulse 35 minutes? In FACT shouldn’t someone have told us that she was (unbeknownst to us) EVER no pulse for that long? Why was that information withheld from us? And then I told them I felt this entire process was medically irresponsible. SO wrong to use our daughter as a “pet project”. This has, upon YOUR DECISIONS gone too far. Then the tears; the chaplain, Dave and I cried. Hard. The rest were stone faced. Then they dropped the bomb. She’s progressed this far you have no choice but to continue on. My reaction was anger. A few choice words. All in all we left feeling we had done a horrible thing by Katie.
We left the meeting feeling very much as if we’d suffered the loss of our child. Again. I can’t explain it but it was a dose of reality. THEY had steamrolled us into this place and here we are. The Dr said, “Look, your daughter will never be the same but she’s gone this far so that’s that”
While Dave and I fumbled through the next few days feeling stunned, Katie went into rehabilitation mode. Slowly, she began responding. She stood up. She pedaled a bike. Shaky, feebly, but she was doing it. She’s still got a lot to relearn, the spasticity has calmed a lot but still interferes with fluid movement. Speech wasn’t coming as yet. Her PT and OT staff told me they’d felt her determination but also noticed she was sad, almost angry. I said “Ya think? As her brain began to calm, her intelligence and her awareness woke up. She became acutely aware of the condition she is in, aware of her surroundings. Aware that no one speaks, they drool. They stare without blinking. She was terrified. After being told she would need a Neurological Psychologist I decided to go into demand mode. Ya know what people? YOU decided to bring her to this place of recovery, you’re going to give her the best care, anything she needs you’re going to deliver it. This path was YOUR choice not Katie’s so YOU’RE going to provide for her.
So, first, she gets the gym to herself without sad people who can’t function. Also, her friends will be allowed to attend.
Second, she gets a set schedule and priority treatment with premium equipment. Yes, we (they) are bringing in new equipment specifically to meet her needs. It was ordered today.
Third, she keeps her 24 hour caregivers. They have eyes and they make sure her care is immediate.
And fourth, you will extend her stay for as long as it takes til she’s ready for outpatient therapy at the next facility.
Fifth, she will receive better nutrition.
Sixth and final, you ALL will have a meeting with me and learn about Addison’s Disease. After all, it’s what landed her here, you’d better learn her needs, symptoms and history of crises.
And then I marched to the Office Depot and bought a white board, work books and markers. She and I spent the wk-end communicating through writing. She’s still does not have fine motor skills but she can get a bit written and the rest I quiz her then she nods or points to yes and no. Her reading ability seems to be at her normal level and her memory is complete. We talked about her fears and I assured her I’ve fought hard for everything she’d wanted but her body has responded with strength and improvement making her already quite impressive. I told her if she regains her speech, she will be famous and we will do a TEDx Talks series around the world. She smiled. She decided she will keep fighting.
Today they changed her trach to one that allows her voice to come through. It was a bit painful and afterwards she cried, but we heard her voice! I said HOLY SHIT YOUR VOICE!! Then I showed her a text pic Louise sent about the UK storm being named Katie and she laughed, again, with sound!!! Sweet glorious sound. We laughed, we cheered and then picked out tomorrow’s outfit for her PT session, because, a girls gotta have cute workout gear. And so, we move forward to working on walking, talking and swallowing. We know she can swallow, we’ve seen it, she just needs to build up to it. She’s got the Katie eye roll back too, and I love it. Are we still angry and scared? All of us? Yes, but we’re also tough.
UPDATE- Day 133
Where to begin? Well, so much is happening- for all of us. Katie is kicking butt in PT and OT. She continues to blow our minds with her strength, determination and persistence.
She is literally walking a distance of 30 feet; back and forth for a good 15 minutes. Additionally she is constantly practicing standing, sitting, turning, exact leg, shoulders, head placement. Every move we take for granted she must relearn, and it looks like she may just do it! I hope to share some video soon. Our current one is too long to post. She’s been doing so well, gaining weight, staying healthy, but, yesterday was a bit of a scary setback. While getting her ready for a visit she suddenly became sick-projectile sick. She was so devastated to have it happen before a friend was to visit. We got her cleaned changed and back in bed. I reassured her that we’re more concerned about her wellness and the visit can happen anytime. However, my main concern was that she immediately needed a stress dose of hydrocortisone; especially since I found out she’d gotten sick at 4 am but no one had called me. Long story short I went to battle demanding her emergency dose of Addison’s meds. First it was brushed off as unimportant. You can imagine how well that sat with me. After preaching Addison’s treatment protocol and demanding the Dr approve it or I’d call 911, it was approved. Bloodwork showed a very elevated WBC, and we are waiting on cultures. It’s likely a UTI which is common but she was xrayed for pneumonia and cleared of that. Unfortunately an infection triggers Addison’s which presents with nausea. I swear I feel like a broken record fighting for her Addison’s Disease to receive the respect and treatment it needs.
Anyway, she was able to still have a visit with Heather and had a restful night.
Today, gosh, today was so good. I was there from 10am til 5:30 pm and we read new medical stories about neurological breakthroughs, finally let her read all of her FB well wishes, discussed making a documentary about her entire story, from diagnosis til she’s mostly done in therapy. She agrees it will help so many others know what to expect. Families need a reference, something to help make decisions and cope. I told Katie her entire story today, everything. So now she knows she was no pulse 35 minutes…and she’s AMAZED. She actually grinned and of course we cried but you can see that her resolve to push harder is even stronger than before. She has a mission to be the first recovery story and you can see the fire in her eyes.
So for now, her walking is improving each week, her hand dexterity is improving and we are still encouraging her to let those sounds out and she’s getting very close to speaking. She will have a swallow test next month. I can say that we’ve both finally moved past our anger- the anger for medical professionals making the decision to drop her in this place of disability- that anger has been tucked away. As I told Katie, we can’t undo where we’re at so we’d may as well find some joy in every day and kick butt while doing so. Thank you so much everyone for the cards and letters, she loves getting mail and sheds a happy thankful tear with every card she reads. Moving on-working on a miracle.